Humbled.
That’s how I was feeling as I rushed inside to change my pouch after a long day out of town. As I peeled the pouch off I sighed with relief. I had spent a lot of my day trying not to be anxious or worry about the pouch I’d put on that morning and it reminded me a lot of the first few months (or maybe even longer..) of adapting to life with an ostomy. The anxiety I was feeling didn’t touch the extremes I experienced right after surgery, but it was an incredible reminder of just how hard it can feel to adapt to something new.
I’ve worn the same appliance system for five years with very few deviations. I had tried a couple different brands in the first year after my surgery but quickly returned to the one I’d been using from the start. Through trial and error, I’ve figured out the intricacies of how to cut it, apply it, empty it, and wear it in such a way that works most comfortably for me. I discovered very early on that I prefer a transparent pouch with a clip closure and NO filter.
I got the itch to give other brands another try just to see if I might like them better now, so I went online and ordered samples. The brand I ordered samples from didn’t seem to offer pouches with a clip closure or no filter, but I ordered them anyway, encouraging myself to be brave and reminding myself that I could always change it back if I didn’t like it. I was also comforted in knowing that thousands of other people, including some of my closest ostomate friends, love this brand, as well as both the velcro closure and filter features.
The memories of how painful an experience was fade, but the pain is not forgotten. Similarly, I remember feeling really anxious about getting leaks as I adapted to life with an ostomy, but I had kind of blocked out (or forgotten?) exactly what that anxiety felt like…until the morning I decided to give my new sample a try. I made sure I knew how to snap the baseplate and pouch together and then went through my normal routine cleaning and prepping my skin, measuring the baseplate, sticking it on and attaching the pouch. It was a little bit awkward because the baseplate was different from the one I usually use and I realized just how comfortable I’ve gotten with the system that I’m used to.
One of the first things I typically do once I attach my new baseplate and pouch to my body is let a little bit of air into the bag. This helps leave some room for my poop to fall down to the bottom of the bag instead of collecting around my stoma. I tried to do this with my new pouch but I had trouble getting the right amount of air in. It didn’t matter though, because the filter released most of the air pretty quickly and I felt like I had a vacuum against my belly. For me, having all of the air sucked out of the pouch gives me anxiety. It makes me feel like my poop will have nowhere to go and like I’ll get a leak if I’m not paying attention.
After I changed my pouch and realized that the filter was making me anxious, I texted my friend who swears by this system with a small vent session and then asked for help, “So, I hate filters because I think they contribute to leaks by creating a vacuum inside the bag so the poop has nowhere to go and it’s making me super nervous. Tips to not having a vacuum on my belly? We’re going hiking a few hours away today so I’ll bring my emergency kit and try not to be anxious the whole time :/”
After I sent her my message, I continued getting my stuff ready to go for my hike and ate breakfast but after half an hour I found myself getting more worked up and couldn’t help but text her again saying, “How do I break the filter? I’m not succeeding at squashing my anxiety. I’m just watching myself create a pancake :(“.
I also asked her how she cleans the velcro closure because every time I’ve used one I’ve gotten poop on my hands and I felt like I was missing something. You know you have an incredible friend when they explain how they clean their bag closure and then offer to send you a video if it’ll help.
My husband and I had a fun date day planned and I wasn’t going to let my anxiety keep me from it. The car drive started out kind of rocky, I was still wrestling with my frustration and feeling pretty cranky. As I realized I was so still winding myself up, I reminded myself that the worst thing could happen would be to get a leak and clean it up. It would by shitty (literally…), but I’d survive.
We ended up having a really fun day. I managed to shift my perspective enough to enjoy myself and gave myself permission to take it off once I got home if I was still uncomfortable. And I did. Right away. Once I put my normal appliance system back on I felt so much more comfortable.
As always, this is just my experience and each of us have different preferences and needs. Filters are SUPER handy if you tend to have a lot of gas. They help release the air from your pouch (without the smell) so that you have more room for poop and don’t find yourself with a leak from the air ballooning your pouch up so much that it pushes it right off your body. Walking around with a cloud of anxiety hanging over my head about getting a leak was not fun, but it was a good reminder of how it can feel when you haven’t figured out a system that works for you. As a new ostomate, you won’t yet know which brand or style works best for you and obviously you can’t just take off an uncomfortable system and go back to not having an ostomy, but you can absolutely order samples from many different companies and give every combination of products a try.
A couple things that made this experience slightly less intense than it was while I was initially adapting to life with an ostomy are that I knew that I could switch back to a system I was familiar with if this new style didn’t work out, and I now have friends to lean on and ask for advice and help from. I hope you know that you’re always welcome to submit a comment or reach out to me via email if you have any questions, concerns, or even just want to share an ostomy-win. I love hearing from you and feel strongly that having someone you can talk to who can identify with what you’re going through is really valuable.
Do you prefer a clip closure or velcro closure? Do you prefer pouches with filter or not? Have you found the system that works for you? Do you have an ostomate friend you reach out to when you have a question or want to share something ostomy-related with someone who would understand?